Psychosomatics 45:336-342, August 2004
© 2004 The Academy of Psychosomatic Medicine
Characteristics and Quality of Illness Behavior in Celiac Disease
Antonio de Rosa, M.D.,
Alda Troncone, Ph.D.,
Manuela Vacca, M.S., and
Carolina Ciacci, M.D.
Received May 15, 2003; revision received Oct. 29, 2003; accepted Nov. 24, 2003. From the Psychiatry Department, Second University of Naples, Naples, Italy; and the Gastrointestinal Unit, Department of Clinical and Experimental Medicine, Federico II University of Naples. Address correspondence to Prof. Ciacci, Facoltà di Medicina e Chirurgia, Università di Napoli "Federico II," Via Pansini, 5 80131 Napoli, Italia; ciacci{at}unina.it (e-mail).
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ABSTRACT
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The study evaluated the illness behavior of patients with celiac disease and the influence of the disease and its treatment on key personality components and adherence to dietary recommendations. Twenty-nine adult patients with celiac disease and 47 matched healthy comparison subjects participated in the study. More than 70% of the celiac disease group scored in the pathological range on at least one scale of the Illness Behavior Questionnaire. Patients who received the diagnosis in adulthood had a lower score for nonconformism, a greater tendency to pretend to be sociable, and higher levels of psychophysiological reactiveness, relative to the comparison subjects. The results suggest that celiac disease may be associated with changes in personality that may interfere with patients' adaptation to living with a chronic disease.
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INTRODUCTION
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Celiac disease is an autoimmune gastrointestinal disease that is caused by gluten ingestion in genetically predisposed individuals. Gluten is a protein contained in some grains, including wheat, barley, and rye. In individuals with celiac disease, gluten intake causes a spectrum of symptoms that range from subclinical effects to overt malabsorption.1
In Italy the prevalence of celiac disease has been estimated to range from 4.9 to 5.7 per 1,000 population (including potential cases of the disease).2 In other countries, even given variation in prevalence, celiac disease is a significant public health problem.3
Adherence to gluten-free diet, which restores the integrity of the intestinal mucosa, is essential for individuals with celiac disease and must be maintained over the patient's lifetime. So far, however, little is known about the relationship between dietetic restriction and psychological disturbances. Depression and lower quality of life have been reported in individuals with celiac disease and have been attributed to patients' perceptions of the restricted diet, which is believed to impair essential development.4,5
Other studies have pointed out the metabolic effects of malabsorption on central mood regulation, particularly in relation to depression.6–8 On the other hand, the link between depression and the immune system is currently subject to debate.9,10 Anxiety and depression have been identified as major causes of lower levels of adherence to treatment recommendations11 and of poor adaptation to the illness4 among patients with celiac disease.
The aim of the current study was to evaluate the illness behavior of patients with celiac disease and examine the influence of the disease and dietetic treatment on the major personality components and the level of general adherence to dietary recommendations.
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METHOD
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A consecutive series of 33 patients with celiac disease referred to the Center for Celiac Disease of the Gastrointestinal Unit of Federico II University of Naples (Italy) from January 2001 to June 2001 were enrolled in the study. The diagnosis of celiac disease was made after routine laboratory investigation, including serological testing for endomysial and transglutaminase antibodies and, according to the classification of Oberhuber et al.,12 intestinal biopsy to test for the presence of subtotal villus atrophy. All patients were recruited during the yearly follow-up visit. The patients with celiac disease and a group of healthy comparison subjects underwent a physical examination, routine laboratory tests, and a transglutaminase antibody test. The patients had previously been instructed to maintain a gluten-free diet. Adherence to dietetic restrictions was evaluated with a visual analogue scale that ranged from 0, "I never eat gluten-free foods," to 10, "I always eat gluten-free foods."4 Four of the 33 patients who were examined were excluded because they had had the diagnosis of celiac disease for only a very short time (2–4 months).
The comparison subjects (N=47) were recruited among the celiac patients' friends and the medical and nonmedical hospital staff. The comparison group was matched with the patient group by age, sex, education, marital status, and socioeconomic level. Socioeconomic level was determined by using a point system based on years of education and type of work.4 All of the patients with celiac disease and all of the comparison subjects came from the Campania region of Italy, were Caucasian, and were evaluated within the same 6-month time period.
The exclusion criteria for both groups included active thyroid disease and the use of psychotropic drugs, alcohol, or other substances of abuse. The demographic characteristics of the study subjects are presented in Table 1. There were no significant differences in sociodemographic variables between the patients with celiac disease and the comparison subjects.
Data on the patients' sociodemographic characteristics, age at diagnosis, and age at first appearance of signs and symptoms of celiac disease were obtained from a questionnaire completed by medical staff. The medical staff administered the Italian version of the Illness Behavior Questionnaire13,14 to the patients with celiac disease. Both the patients and the comparison subjects were assessed with the Italian version of the Eysenck Personality Questionnaire, which evaluates stable personality traits, and the Psychophysiological Questionnaire, which explores stress-induced emotional activation. (The Italian version of the Eysenck Personality Questionnaire and the Psychophysiological Questionnaire are part of the Cognitive Behavioural Assessment battery developed by Sanavio et al.15) The psychologist in charge of questionnaire administration was blind to the disease condition of the participants.
Illness Behavior Questionnaire
The Italian version of Pilowsky and Spence's Illness Behavior Questionnaire13,14 was used in the study. The questionnaire includes seven scales that evaluate abnormal illness behavior, which Pilowsky defined as "the persistence of an inappropriate or maladaptive mode of perceiving, evaluating or acting in relation to one's own state of health despite the fact that a doctor has provided a lucid and accurate appraisal of the situation and management to be followed."16,17 The instrument is used to assess the patient's feelings toward the significant persons in his or her life, including the treating physicians, and includes questions about the patient's perception of his or her own psychosocial status. The seven scales of the Illness Behavior Questionnaire are: 1) the general hypochondriasis scale, which assesses the extent of fearful attitudes toward illness that include some insight into the excessive nature of the fear; 2) the disease conviction scale, which measures the strength of the belief that a somatic disorder is present and the degree of reluctance to accept reassurance (questions focused on bodily symptoms and sensations and sleep disturbances); 3) the psychological versus somatic focusing scale, which measures the extent of a psychological versus a somatic focus in perception of the disease (high scores indicate possible adoption of a psychological perspective on the illness; low scores reflect a focus on somatic problems and a tendency to reject the possibility of a psychological dimension to the condition); 4) the affective inhibition scale, on which high scores indicate the inability to communicate feelings, especially negative ones; 5) the affective disturbance scale, which assesses the presence of anxiety, depression, and tension; 6) the denial scale, which measures the tendency to deny life stresses and to attribute all current difficulties to a somatic disorder (high scores indicate a belief that a cure for physical problems would solve all life problems; low scores indicate a belief that ongoing life problems would continue even if the person was physically well); and 7) the irritability scale, on which high scores indicate the presence of interpersonal friction.
Eysenck Personality Questionnaire
The Italian version of the Eysenck Personality Questionnaire,15 an adaptation of the Eysenck Personality Inventory,18 is composed of four scales: 1) the N scale (neuroticism), which measures the emotional stability or instability of the person (anxious, unstable, or depressed individuals with an easily excitable personality have high scores on this scale); 2) the E scale (extroversion), which indicates the extent to which the person is introverted or extroverted; 3) the P scale (psychoticism), which indicates the extent to which the person's social behavior is characterized by nonconformism, low levels of social interaction, or no social interaction; and 4) the L scale (lie), which measures the person's tendency to pretend to be sociable.
Pychophysiological Questionnaire
The Psychophysiological Questionnaire15 is a 30-item scale that was developed from an earlier 64-item version created by Pancheri and Chiari.19 This instrument explores the respondent's level of stress-induced emotional activation that is experienced as one or more somatic symptoms, such as dizziness, confusion, and excessive sweating, without an organic cause.
Statistical Analysis
Homogeneity of the demographic and socioeconomic characteristics of the patient and comparison groups was evaluated by using chi-square tests. The Mann-Whitney test was used to compare nonparametric variables between groups. Spearman rank-order correlation was used to analyze the relationships between scale scores and other variables, including subjects' age and the duration of the patients' illness and dietetic restriction. A statistical significance level of p 0.05 was used.
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RESULTS
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Subjects
The study included 29 adults with celiac disease (25 women and four men) with a mean age of 26.72 years (SD=9.34) (Table 1). Their mean age at diagnosis was 16.92 years (SD=13.67), and the mean duration of their restriction to a gluten-free was 9.52 years (SD=8.24, range 1–16) (Table 2). The mean duration of active disease before diagnosis–the number of years between the first appearance of the signs and symptoms of celiac disease and the formal diagnosis–was 5.83 years (SD=8.02) (Table 2). The total duration of disease–the sum of the duration of active disease before diagnosis and the duration of dietetic restriction–was 15.66 years (SD=9.83) (Table 2). Eleven of the 29 patients had received the diagnosis of celiac disease in the first 2 years of life and 18 had received the diagnosis in adulthood.
The patients' mean score on the scale measuring adherence to a gluten-free diet was 8.63 (SD=2.19), indicating overall a high level of adherence. The results of a clinical examination and laboratory tests were compatible with a condition of remission of celiac disease for all patients (data not shown).
Illness Behavior and Personality Measures
Table 3 shows the percentages of celiac disease patients who had scores in the pathological range on the scales of the Illness Behavior Questionnaire. Twenty-one of 29 celiac disease patients (72.4%) had a score in the pathological range on at least one of the scales. The scales on which the highest number of patients had scores in the pathological range were the affective inhibition scale (11 patients, 37.9%) and the irritability scale (nine patients, 31.0%). No significant differences in scale scores were found between the celiac disease patients who had received the diagnosis in childhood (N=11) and those who had received the diagnosis in adulthood (N=18).
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TABLE 3. Frequency of Scores in the Pathological Range on Scales of the Illness Behavior Questionnaire Among Patients With Celiac Disease (N=29)
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Table 4 shows the subjects' mean scores on the scales of the Italian version of the Eysenck Personality Questionnaire. The scores of the celiac disease patients and the comparison subjects differed significantly on the P scale (psychoticism scale) and the L scale (lie scale). In particular, celiac disease patients who received the diagnosis in adulthood had lower scores on the P (psychotism) scale (U=224.5, p=0.003) and higher scores on the L (lie) scale (U=270, p<0.03). Total duration of disease was negatively correlated with scores on the N (neuroticism) scale (rs=–0.42, p<0.03).
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TABLE 4. Scores on the Italian Version of the Eysenck Personality Questionnaire and the Psychophysiologic Questionnaire of Patients With Celiac Disease and Healthy Comparison Subjectsa
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Table 4 also shows the subjects' scores on the Psychophysiological Questionnaire. The celiac disease patients who received the diagnosis in adulthood had significantly higher scores than the comparison subjects (U=282, p<0.04).
No relationship was found between subjects' age, duration of dietetic restriction, duration of active disease before diagnosis, and scores on any of the study measures. Adherence to a gluten-free diet was positively related to the total duration of disease (rs=0.45, p<=0.02) and to the age of the celiac disease patients (rs=0.48, p=0.009).
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DISCUSSION
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The existence of chronic illness influences the patient's psychological status, even if the disease is asymptomatic or under clinical control. The results of the current study suggest that celiac disease is associated with a psychological profile (celiac profile) composed of two principal characteristics: 1) irritability with related psychophysiological reactiveness and 2) a type of conformism that reflects both difficulty in expressing personal feelings and the desire to have a good self-image.
The greater psychophysiologial reactiveness of the celiac disease group, relative to the comparison group, confirmed by the patients' high scores on the irritability scale of the Illness Behavior Questionnaire, may be related to preoccupation with the disease condition. In the celiac disease patients, the high frequency of psychophysiological reactions, including sweating, tremors, muscular tension, fatigue, and tachycardia, may be related to a condition of general irritability, or anxious vigilance, that develops because of the patients' feelings about the disease. Mood modification toward downregulation of tonicity and irritability is frequent in people with celiac disease.20 State anxiety, more than trait anxiety, is considered to be a reaction to chronic disease conditions and not a personality component.11,21 Anxiety symptoms, which are often related to the fear of having symptoms rather than to the real experience of the symptoms, are often reported to be limiting in work or interpersonal relationships.21
Anxiety and depression have been identified as causes of low levels of adherence to dietetic restriction11 and have been related to impairment in patients' general adaptation to the disease condition.4
The anxious vigilance found in the celiac disease patients in this study can be related to the condition of having a chronic disease (i.e., the patient is vigilant for the appearance of physical symptoms) and to the high specificity of the celiac disease condition (i.e., the celiac disease patient experiences alarm related to possible gluten ingestion and the need to distinguish "good" food from "bad" food).
Children and adults who receive a diagnosis of celiac disease must change their food habits and lifestyles. The change is first limited to domestic habits, including shopping for and cooking different foods. Thereafter, the change is extended to the patient's social and working life, including eating in restaurants and while traveling. The patient's awareness of the potential for gluten contamination of his or her food explains the condition of anxious vigilance. The tendency to conformist behavior demonstrated by the low P scale scores on the Italian version of the Eysenck Personality Questionnaire is in accordance with a condition of anxious vigilance that limits engagement in behaviors or life experiences that entail some risk. The celiac disease patients' high scores on the affective inhibition scale of the Illness Behavior Questionnaire indicate an inability to communicate feelings and reinforce the data supporting a tendency to conformist behavior. All the data suggest a lifestyle limited by a lifelong disease condition.
In our clinical experience, celiac disease patients who receive the diagnosis in adulthood are more likely to have the celiac profile than those who receive the diagnosis in childhood. The sudden modification of the food habits of an adult is certainly more challenging than a change that occurs in childhood. The correlation of total years of disease with the patients' N scale scores on the Italian version of the Eysenck Personality Questionnaire indicated an inverse relationship between total years of disease and emotional instability. Patients who received the diagnosis in childhood—and thus had a longer duration of disease—were less likely to have high N values than those who received the diagnosis as adults.
In adulthood, the diagnosis of celiac disease creates feelings of being different from others. Studies of adherence to a gluten-free diet confirmed that the feeling of being different from peers is common among teenagers with celiac disease.22 Patients may fear that if they reveal that they have celiac disease in social contexts such as restaurants or convivial gatherings, they may be identified by others as disease-affected and may lose their role, image, and place in society. Our data on conformism and desire for social acceptance may be in line with observations that highlight subjects' fear of being different and thus rejected by the social environment.
Previous findings have suggested that permanent dietetic restrictions together with stress because of gastrointestinal symptoms induce a focus on weight gain and food.23 In our clinical experience, the dietetic restrictions associated with celiac disease are associated with increased attention to food in the person with celiac disease and his or her family and friends. It is noteworthy that despite a greater difficulty in adaptation to the disease, adults show an age-related trend for better compliance with dietetic restrictions.
Finally, a longitudinal study of celiac disease patients who adhered to a gluten-free diet for 10 years5 found that women with celiac disease are more likely to have a poor quality of life than men with the disease. Women constituted 86% of the celiac disease patients in our study, and we can hypothesize that they frequently have difficulty in management of daily life.
Our data confirm the earlier recommendation24 that it is crucial to inform celiac disease patients about these areas of vulnerability in order to increase their adaptation to the illness and improve their quality of life. Awareness of the psychological effects of the celiac disease diagnosis may help create a stronger doctor-patient relationship that will benefit patients' process of acceptance and elaboration of feeling related to living with celiac disease.
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ACKNOWLEDGMENTS
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The authors thank Wendy Parsons for reviewing the manuscript and Carla Perrot, Lina Mautone, and Patrizia Ferro for providing nursing care to the patients with celiac disease.
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A. Karwautz, G. Wagner, G. Berger, U. Sinnreich, V. Grylli, and W.-D. Huber
Eating Pathology in Adolescents With Celiac Disease
Psychosomatics,
September 1, 2008;
49(5):
399 - 406.
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ABSTRACT
INTRODUCTION
